Claiming Disability - Lived Experience with Cerebral Palsy

GUEST BLOG

By Erin Noon Kay

Who is Erin?

Erin Noon Kay is the CEO & Founder of Claiming Disability. Erin identifies as a “fierce disabled entrepreneurial woman,” with Cerebral Palsy. She uses a walker and wheelchair occasionally, but she believes it’s “OK” to look disabled and is working hard to bring representation for disability in film and everyday culture through media projects and disability related content. Erin believes “disabled,” is NOT is a bad word, it’s a beautiful community, and a culture. She has worked in the non-profit, governmental, and business sector for over 10 years.

What is Claiming Disability?

Claiming Disability, which celebrates disability everyday, is connected to over 35k+ disability advocates from around the world, including Jim Lebrecht and Nicole Newnham, the Directors/Executive Producers of Crip Camp. A groundbreaking summer camp galvanizes a group of teens with disabilities to help build a movement, forging a new path toward greater equality.

Claiming Disability wants to spread our messages of empowerment and compassion. We believe that a single action can make a difference in the community, and that shared experiences can greatly impact inclusion. Through advocacy and outreach activities, our team and our community of supporters works to embrace diversity and disability as an asset toward the greater good.

What is Cerebral Palsy? How Does it Impact Your Life?

Cerebral Palsy is one of the most common disabilities in the community. According to the Center of Disease Control (CDC), “Cerebral Palsy (CP) is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles.”

Personally, CP impacts every facet of my daily life in one way or another, including my accessibility needs of using a walker to get around. I am unable to walk unassisted without my walker or wheelchair. This is absolutely not a tragedy, but a reality for most people who experience Cerebral Palsy. Through my advocacy with Claiming Disability, I teach many disabled people and non-disabled people about the importance of disability pride.

“In world obsessed with perfection, loving your disabled body is a revolutionary act,” –Erin Noon Kay CEO and Founder of Claiming Disability

Disabled people can fight ableism (discrimination against disabled people for our abilities, physical attributes, or mental health status) with disability pride. The ableism in society wants us to feel ugly. Ableism wants us to feel like less so we don’t fight. The able bodied standard isn’t my standard. Disability Pride liberates, ableism lies,”- Erin Noon Kay CEO and Founder of Claiming Disability

I struggle with chronic pain associated with many surgeries I’ve had in youth. Most people with Cerebral Palsy or another form of disability will struggle with mental illness as well. That’s okay, the barriers we face as disabled people, the discrimination, the isolation, inaccessibility attributes to our mental health status. As disabled people, we must understand that in a world that’s obsessed with perfection, loving our disabled body and identity is a revolutionary act. It also is not a linear journey. Educators need to understand the importance of dismantling ableism, (a form of oppression against disabled people) because ableism is ingrained in our culture. We combat ableism with disability pride.

Facts & Assumptions about CP

According to the CDC, “CP is the most common motor disability of childhood. About 1 in 345 children has been identified with CP according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network. CP is more common among boys than girls, and more common among black children than among white children.”

CP is incredibly common. Disabled people aren’t a cautionary tale or even heroes, just regular people. We have a tendency in society to put disabled people on pedestals, and not allow an inch of humanness to exist. Most people will become disabled in their lifetime. Disability of any kind is a natural part of life.

Commonly Asked Questions about Cerebral Palsy

#1 What terms are appropriate to use in the classroom to refer to disabled students?

Person- First Language

Person with disabilities, seen as seeing the person first, a term embraced by disabled and non-disabled people usually embraced in social services, non-profits.

Identity-First Language

Disabled Person a product of the disability pride movement. The Reclamation movement, as it refers to the disabled community, is the reclaiming of certain outdated terms like Disabled because social services, non-profits, have stigmatized the term.

Disabled is not a bad word. I am a person, I am a disabled person.

Ask disabled people what their preference is. Don’t be afraid to talk about disability culture and identity.

*Please understand the importance of Reclamation language for the disabled community, please sit with your own discomfort about disabled language.*

#2 What are some things you can do right now to make the classroom experience more accessible to my disabled students?

Image Descriptions/Video – Description of images up to 1 paragraph to 5.
Closed Captioning – Individualized audio descriptions, Otter AI, Zoom, etc.
Alt text – Shorter description usually up to 1 paragraph.
In-Person Events – Virtual Options, Masks, hire a disabled consultant for accessibility.

Email Erin at [email protected]

What was school like for you as a kid?
And work as an adult?

School as a disabled child was full of inaccessibility, misunderstandings, and unfortunately a lot of bullying surrounding my physical appearance. I grew up in a small school district, and I had a very visible disability. Some of your students have invisible disabilities as well. Invisible disabilities are valid. As an adult, I’ve struggled in the workforce with discrimination as many disabled people have. According to the Bureau of Labor Statistics, In 2022, only about 21 percent of people with a disability in the U.S. were employed.